This story is part of a partnership with Scripps News.
In North Carolina, lawmakers angry that breast cancer patients were being denied reconstructive surgery passed a measure forcing health insurance companies to pay. In Arizona, lawmakers intervened to protect people with diabetes, requiring health plans to cover their supplies. Elected officials in more than a dozen states, from Oklahoma to California, have enacted laws requiring insurance companies to pay for emergency services.
Over the past four decades, states have enacted hundreds of laws that specify exactly what insurance companies must cover so that consumers are not left in debt or forced to skip medications or procedures. But ProPublica found that health plans violated those rules at least dozens of times over the past five years.
In the most egregious cases, patients are denied life-saving care. A ProPublica investigation on Wednesday found that a Michigan company refused to pay for an FDA-approved cancer drug for patient Forrest VanPatten, despite state law requiring insurers to cover the drug. The expensive treatment provided Van Patten’s only chance of survival. The father-of-two died aged 50 while still battling insurance companies for treatment. Regulators never intervened.
These laws don’t apply to all types of health plans, but they should protect tens of millions of people. AHIP, a trade group formerly known as America’s Health Insurance Plans, said the new mandate would be costly for consumers and states, “tying insurers’ hands and limiting plan innovation” by requiring specific benefits. Still, the trade group said its members took steps to ensure compliance with the regulations.
Researchers, consumer advocates and even some regulators say state insurance departments are responsible for enforcing these laws, but many departments don’t have the capacity to do so. These agencies oversee all types of insurance, including plans that cover cars, homes and people’s health. However, they hired fewer people last year than a decade ago. Their first priority is ensuring that the plan is solvent; protecting consumers from unlawful denials often takes a back seat.
“Honestly, they don’t have the resources to do the kind of audits that we need,” said Sara McMenamin, an associate professor of public health at the University of California, San Diego, who has been studying implementation of state directives. .
Agencies generally do not investigate denials of health insurance unless the policyholder or a family member files a complaint. But denial can happen at the worst moments in people’s lives, when they have little energy left to argue with bureaucracy. One study found that people who purchased insurance on HealthCare.gov had less than a 1 percent chance of filing an appeal.
ProPublica surveyed insurance agencies in every state and found just 45 enforcement actions since 2018 involving coverage denials that violated insurance regulations. Regulators sometimes treat consumer complaints as one-offs, forcing insurers to pay for that individual’s treatment without considering whether the broader group faces similar wrongful denials.
When regulators decided to investigate deeper, they found that a single complaint was emblematic of a systemic problem affecting thousands of people.
In 2017, a woman complained to Maine insurance regulators that her carrier, Aetna, violated state law by mishandling her claim and charging her for services related to the birth of her child. After contacting the state, Aetna admitted the error and issued a refund.
That winter, the woman gave birth to her second child, and Antay made the same mistake again. She filed another complaint. This time, when the government asked Aetna to pay, it also asked for more extensive childbirth claims data. The regulator found the insurer had miscalculated claims related to more than 1,000 newborns over four years. Aetna refunded a total of $1.6 million and agreed to pay a $150,000 penalty if it failed to comply with the conditions outlined in the consent agreement.
This is a rare victory. However, the potential fine represents less than 0.002% of Aetna parent company CVS Health’s $6.63 billion in profits for the year.
Aetna spokesman Alex Kepnes said the company resolved the issue in 2019 to the state’s satisfaction. Kepnis declined to answer why the insurance company failed to resolve the issue after the first complaint.
Patients often do not know what care they are entitled to under state regulations. One survey found that 86% of people with health insurance don’t know which government agency to contact for help. Knowing how to operate the system can be huge for patients who are burdened with huge medical bills.
In December 2022, Samantha Slabyk felt a sudden, severe pain in her right lower abdomen. The San Marcos, Texas, resident took herself to an urgent care clinic, but doctors rushed her by ambulance to a nearby hospital after a CT scan revealed she had appendicitis. “Everyone said this was an emergency and needed to be addressed immediately,” Slabek said.
Texas has long had a law requiring insurance companies to cover the cost of medical care needed by patients in emergencies. That month, however, her insurance company, Ambetter, wrote in a letter that it would not pay the $93,000 bill because the appendectomy was performed at an out-of-network facility.
Slabek is studying to be a physician assistant and has worked as an emergency physician. Her fiancé’s brother-in-law works in medical billing and offers her advice on how to fight back, as does her mother—whose cancer diagnosis means she interacts with health insurance companies frequently. These connections and experiences gave Slabek an unusual understanding of his rights and how the system worked. Still, every time she contacted someone from Ambert, she felt like she was being held back. Slabek felt lost.
By June, she had had enough and decided to file a complaint with the Texas Department of Insurance. Five days later, she received a call from Ambetter employees, apologizing and saying they would handle the procedure as an emergency and pay for it.
Centene, Ambetter’s parent company, did not respond to emailed questions or calls seeking comment. (The state informed Slabyk it had closed the complaint.)
“I’m surrounded by a lot of knowledgeable people who give me great advice,” Slabek said. “So if you’re just trying to, on your own, not be in the health care system, I mean, I can totally see giving up.”
California must pass not one but two laws to force insurance companies to pay for infertility treatments. One lawmaker said insurers still often say they are considering introducing a third.
After lawmakers began requiring such coverage in 1990, some health plans took a narrow view. They refuse to pay for the preservation of eggs, sperm or reproductive tissue for patients undergoing treatment for conditions such as cancer that could harm fertility. Some patients delay chemotherapy to try to conceive earlier, or go into debt to pay for it out of pocket. Regulators have forced insurance companies to pay in some cases, but elected officials worry other patients won’t be able to access this care.
State Sen. Anthony Portantino and colleagues amended the law in 2019 to make it clear that these treatments must be covered. Even so, insurance companies put up obstacles.
“Some insurance companies are taking a very strict approach and must give chemotherapy,” said Portantino, a Democrat. For example, patients who need cancer surgery that could lead to infertility face rejection.
Portantino said he plans to work with California’s largest health insurance regulator to make it clear fertility preservation must be more broadly covered. If that doesn’t work, he said he would turn to legislation again.
Other regulators are working to strengthen front-end enforcement. Health insurance companies file annual documents with the states in which they operate detailing the treatments and services the company does and does not cover. Regulators examine these policies to determine whether insurance companies are complying with state regulations. In Vermont, the insurance department is using federal grants to work with outside companies to improve these reviews. Through employee training and education, the department hopes to catch insurance companies that don’t comply with state law before Vermont residents face erroneous denials.
Not all health plans must follow state regulations. Approximately 65% of employees who receive insurance through employment work for companies that directly pay their health care costs. These companies often hire insurance companies just to handle claims. Known as self-funded plans, they are regulated by the federal government and are not subject to state underwriting requirements. Employers are increasingly turning to such plans, which tend to be cheaper, in part because they don’t have to pay the cost of care required by states. (The federal government also regulates coverage, but state laws can be more restrictive.)
For patients, this may mean less protection from rejection.
When Sayeh Peterson, a 57-year-old non-smoker, was diagnosed with stage 4 lung cancer, her doctor ordered genetic testing to determine the cause. The tests revealed that a rare genetic mutation is actually responsible for Peterson’s disease and gave doctors the information they needed to develop treatments that target the mutation. Her state of Arizona requires insurance companies to cover the cost of such testing, but Peterson’s UnitedHealthcare plan is self-funded by her husband’s employer, so that law doesn’t apply. She and her husband were left with a bill of more than $12,000.
“There is insufficient medical evidence to support the use of all of these tests,” UnitedHealth Group spokesperson Maria Gordon-Sidlow wrote in response to questions.
While Peterson received a treatment plan tailored to the genetic test results, she continued to appeal the denial months later. “We were told we had great insurance,” Peterson said. “But then they denied covering the test that would determine my treatment. How did you resolve that?”